I'll Call It Like I See It

by sheila morris

Tag: Alzheimer’s disease

  • The Reality of Memory Care: A Daughter’s Perspective

    The Reality of Memory Care: A Daughter’s Perspective


    Fourteen years ago the first post I published here in the month of December began with a nursery rhyme that had a darker theme than the usual holiday cards season’s greetings I sent to friends and family throughout the month. Spoiler alert, no deck the halls.

    HUMPTY DUMPTY

    Humpty Dumpty sat on a wall.

    Humpty Dumpty had a great fall,

    And all the King’s horses and all the King’s men

    Couldn’t put Humpty together again.

    —— Old English Nursery Rhyme

                I noticed the red dried blood and purple bruising on the top of her left hand as she sat with both hands folded in the large brown leather recliner that was her assigned seat in the den and wondered what in the world had happened.   This semi-conscious frail woman with wispy uncombed snow white hair slouched down in a chair that swallowed her…with her feet up in their usual elevated position.  Her green sweat suit pants and bright flowered cotton blouse she wore today didn’t belong to her, but they were clean and looked comfortable enough.  She sat on a white pad to prevent accidents to the leather chair.  She was dozing when I came through the door and didn’t stir when I bent to kiss her unwrinkled forehead.   She looked up at me and smiled and then closed her eyes again.   My mother wasn’t interested in talking today.

                Her caregiver Kathy sat across from me on the well-worn sofa and noticed my glance at Mom’s hands.   Kathy was a tall woman and big-boned as we used to say when describing a woman her size.  She had just stepped out of the shower when I arrived for my visit and her hair was wet and pulled back from her not unattractive face.   She had a great smile and genuineness I liked.  

                “Has your mother always been a scratcher or is this something new?” she asked.   “Most of the time when we struggle to get her to take a shower she scratches Norma or me.   I’ve got a new one right here.”   She pointed to a fresh scratch on her hand.   “Yesterday Selma thought she was scratching me but instead she scratched herself so hard on her own hand she made it bleed and then pulled off the band aid I put on it.  It looks worse than it is, though.”

                The idea of my mother being a “scratcher” was like a foreign movie without subtitles.  Difficult to comprehend, yet I knew it was true.  I’d heard a nurse say the same thing in her hospital room a few weeks ago to the young aide who was to give Mom a bath in her bed.  “Be careful, she’s a scratcher,” the nurse said.   I had almost fainted.  My mother, the prim and proper little woman who taught second grade in a public school for twenty-five years and played the piano in Southern Baptist churches for more than fifty years, was a scratcher.   It’s a world gone mad.

                “No, it’s not new,” I said.   “I’m not sure how long she’s been doing it, but I know it happened at least once during her hospital stay several weeks ago.  I’m so sorry she does it to you, but I can tell you it’s completely out of character for her.”

                “Oh, no, don’t worry.  I totally understand.  We’ve seen most everything with our Alzheimer folks,” Kathy said.

                I had entrusted the care of my mother six weeks ago to the two sisters, Kathy and Norma, who lived in the country twenty-two miles from our home in Montgomery, Texas.   Their brick house was an unassuming ranch style with a beautiful swimming pool screened and covered like the ones I had seen in Florida.  This made sense when I found they grew up in the Melbourne area.  The sisters came highly recommended to me by a friend whose father lived with them for seven years before he died last year.   My friend said her family had chosen them from several options and never regretted the choice.

                Mom lived in a Memory Care Unit for the past four years in a large assisted-living residential community in southwest Houston.   The setting was relatively plush and her unit housed twenty patients.   The cost rose every year she was there and was now almost $6,000 a month for her care for moderate to severe dementia and the related deterioration of her physical capacities.  Incontinence and lack of ability to walk without a walker were major changes in her condition in recent years.   Her world was sustained by her routine and the familiar surroundings of her private small apartment that defined it.   Locked entrances and exits set her boundaries and she adjusted to this world with an acceptance bordering on relief from the necessity of trying to preserve an identity she had long forgotten.   When I visited her in the Memory Care Unit, I typically found her in good spirits and checking her watch to see what she was supposed to do next.   Was it time for a meal?  Should she be in the dining room?   Did she need to go to the living room for a movie or exercise class or Wheel of Fortune or Bingo?   Were they going out for ice cream?   Someone had a plan, and my mother loved a plan.

                God bless long-term care insurance and the benefits it provided that covered the last four years of my mother’s stay in Houston.   Unfortunately, her benefit period ended this fall and economic realities made change unavoidable.   Her move to the house in the country was an answer for one problem but generated a host of others.   On the day I drove her to her new home, the conversation was dramatic foreshadowing of the days to come.

                “Mom, don’t you think it’s beautiful to be in the country like this?” I asked her as we rode along in my pickup truck.

                “Yes, it’s beautiful all right, but I wouldn’t want to live out here,” she replied.

                Indeed, she did not go gently into that good night, as the poet Dylan Thomas described.   When we arrived at her new home, she had forgotten the hamburger and fries I’d bribed her with at lunch to improve her mood.   She reluctantly sat down in the den with her two new compatriots, Anne and Virginia.   Anne had mild to moderate dementia and was in her early eighties, I would learn later.   She was an attractive frail woman with pulmonary issues and needed frequent breathing treatments.   Virginia was eighty-nine and proud of it and was in a better mental and physical state than either Mom or Anne.   She forgot words but generally followed conversation threads and understood contexts.  She was the only one of the three women who didn’t need a walker.    I liked the two women immediately and hoped Mom would, too.

                “I don’t understand why I have to be here, and I don’t think it’s right for you to bring me  without telling me we were coming to stay,” Mom said to me when we sat down on the sofa in the den.   Anne and Virginia each sat in large recliners facing the sofa and listened to our conversation.    Lack of privacy was a new challenge in the intimate den, I thought.

                “Well, they did the same thing to me,” Anne said to Mom.   “My daughter Beverly and her husband just brought me in here one day and left.”

                “Me, too,” Virginia chimed in.   “But I like it now and I’m glad you’re moving in.   You can have the other big chair.   I hope we don’t get anybody else because we only have three big chairs.”

                And so began the next chapter in my mother’s battle with the devils of her own mind and body.   Within ten days, as we began the process of changing to local doctors and pharmacies for her medications, she developed a severe urinary tract infection, which is not uncommon for women of her age and physical state.   But she required treatment in the community hospital for a week and after I brought her home from that stay, she hasn’t been the same.   She says little and doesn’t eat solid food.   The sisters feed her a liquid diet through a contraption that looks like an oversized eye dropper to me.   She’s had company in the hospital and in her new home – visits from nephews, cousins, other family members and even a visit from her former pastor.   She greets everyone with a smile and says a practiced thank you for coming.  The level of recognition appears to be distant with no connection to the present. 

                Her main question for me in the hospital as she lay attached to tubes of all sorts day after day was, “How long are you going to be in the hospital?  I didn’t know you were sick.”   I told her I didn’t know how long but I was glad she was there with me.    

                Did she have the uti before she moved?   Probably.   Would she have been so sick if she hadn’t moved?  Maybe not.  The mind and body work strangely in tandem, I’ve observed, and my mother is seemingly lost without her old planned life in the Memory Care Unit.   Hopefully, time will allow her to find a new routine that will offer her the comfort of consistency.   Her world is like the world of Humpty Dumpty, however.   All the King’s horses and all the King’s men won’t be able to put Humpty together again as he once was.  The fall has been too great.

    **********************

    On a lighter note, Pretty and I had our granddaughters Ella (6) and Molly (seven weeks shy of 4) for a weekend sleepover. The little girls have busy lives now, and I hadn’t seen them for more than a week, which was unusual; Molly sat down at the table where she found her new colors to begin work on the blank paper in front of her. She looked up at me as I hovered to help her get started and asked, Naynay, are you still old?

    Hilarious! All the king’s horses and all the king’s men can’t make Naynay young again.

  • mind over memory

    mind over memory


    Groundbreaking research is currently being conducted in the medical field on treatment programs including new medicines for dementia and Alzheimer’s disease. In 2011 when I wrote this piece and published it for the first time, Pretty and I had become caregivers for my mother for the previous three years with the goals of keeping her safe and comfortable. We were told her dementia would get progressively worse with no hope for improvement. We saw that prognosis slowly come true. Last week Pretty’s ongoing work on bringing order to the very old boxes in her warehouse revealed a small black box containing my mother’s notebook prepared by the funeral home that took care of her final remains and resting place in 2012. Inside the notebook was her copy of my first book Deep in the Heart: A Memoir of Love and Longing that I gave her in 2007.

    ****************

    August 08, 2011

    Last week I visited my mother who is in a Memory Care Unit in a facility in Houston, Texas.  She is eighty-three years old and has lived there for two years.  She is a short, thin woman with severe scoliosis.  Her curved spine makes walking difficult, but she shuffles along with the customary purpose and determination that characterized her entire life.  Her silver hair looks much the same as it has for the last thirty years, missing only the rigidity it once had as a result of weekly trips to the beauty parlor and massive amounts of hairspray.

    Her skin is extraordinarily free of wrinkles and typically covered with makeup.  She wears the identical mismatched colors she wore on my last visit.  Black blouse and blue pants.  This is atypical for the prim, little woman for whom image was so important throughout her life and is indicative of the effect of her dementia.

    My mother is a stubborn woman who wanted to control everyone and everything in her life because she grew up in a home ruled by poverty and loss and had no control over anything.  Her father died when she was eleven years old.  He left a family of four children and assorted business debts to a wife with no education past the third grade.  Life wasn’t easy for the little girl and her three older brothers who were raised by a single mom in a rural east Texas town during the Great Depression.

    My mom survived, married her childhood sweetheart, and had a daughter.  The great passions of her life, which she shared with my father, were religion and education and me, possibly in that order.  She played the piano in Southern Baptist churches for over sixty years.  She taught elementary grades in three different Texas public schools for twenty-five years.  The heart of the tragedies in her adult life made a complete circle and returned to losses similar to the ones she experienced in her childhood: her mother who fought and lost a battle with depression, two husbands who waged unsuccessful wars against cancer, an invalid brother who progressively demanded more care until his death, and a daughter whose sexual orientation defied the laws of her church.  Alas, no grandchildren.

    My sense is that my mother prefers the order of her life now to the chaos that confronted her when dementia began to overpower her.  She knew she was losing control of everything, and she did not go gently into that good night.  Today, she seems more content.  At least, that’s my observation during my infrequent visits.

    “My daughter lives a thousand miles from me,” she always announces to anyone who will listen.  “She can’t stay long.  She’s got to get back to work.”

    We struggle to find things to talk about when I visit, and that isn’t merely a consequence of her condition.  We’ve had a difficult relationship.  Our happiest moments now are often the times we spend taking naps.  She has a bed with a faded navy blue and white striped bedspread, a dark blue corduroy recliner at the foot of her bed, and one small wooden chair next to her desk.  I sleep in the recliner, and she closes her eyes while she stretches out on the bed.

    The room is quiet with occasional noises from other residents and staff in the hallway outside her door.  They don’t disturb us.  She has no interest in the television I thought was so important for her to take when I moved her into this place.  I notice it is unplugged.  Again.

    “Lightning may strike,” she says when I ask her why she refuses to watch the TV in her room.  “Besides, I like to watch the shows with the others on the big TV.  Sometimes we watch Wheel of Fortune, and sometimes we watch a movie.”

    I give up and close my eyes.

    “I love this book,” my mother says, startling me awake with her words.  I open my eyes to see her sitting across from me.  She’s in the small wooden chair with the straight back.  I can’t believe she’s holding the copy of my book, Deep in the Heart, which I gave her two years ago.  I never saw the book since then in any of my visits, and I assumed she either threw it away or lost it.  I was also stunned to see how worn it was.  The only other book she had that I’d seen in that condition was The Holy Bible.

    “I know all the people in this book,” she continues.  “And many of the stories, too.”

    “Yes, you do,” I agree.  “The book is about our family.”

    And, then, for the second time in as many weeks, I hear another reader say my words.  My mother reads to me as she rarely did when I was a child.  She was always too busy with the tasks of studying when she went to college, preparing for classes when she taught school, cooking, cleaning, ironing, practicing her music for Sunday and choir practice—she couldn’t sit still unless my dad insisted that she stop to catch her breath.

    But, today, she reads to me.  She laughs at the right moments and makes sure to read “with expression,” as the teacher in her remembers.  Occasionally, she turns a page and already knows what the next words are.  I’m amazed and moved.  I have to fight the tears that could spoil the moment for us.  I think of the costs of dishonesty on my part, and denial on hers for sixty-five years. The sense of loss is overwhelming.

    The words connect us as she reads.  For the first time in a very long while, we’re at ease with each other.  Just the two of us in the little room with words that renew a connection severed by a distance not measured in miles.  She chooses stories that are not about her or her daughter’s differences.  That’s her prerogative, because she’s the reader.

    She reads from a place deep within her that has refused to surrender these memories.  When she tires, she closes the book and sits back in the chair.

    “We’ll read some more later,” she says.

    I lean closer to her.

    “Yes, we will. It makes me so happy to know you like the book.  It took me two years to write these stories, but I’m glad you enjoy them so much.”

    “Two years,” she repeats.  “You have a wonderful vocabulary.”

    *******************

    what Pretty found

  • The Photo Finish


    In 1965 when I was a freshman in college my parents bought their first home ever in Rosenberg, Texas, after almost twenty years of marriage.   My dad was the assistant superintendent of the local school district and my mother taught second grade in one of the elementary schools in the district.   Since I wasn’t living with them, I’m not sure how the decision was made to hire someone to help with cleaning the bigger new house, but when I was home for spring break, my mom introduced me to Viola who was hired for that purpose.   When I returned to stay the summer with my folks, Viola was gone.

    I wasn’t sure what happened to Viola but was so self- absorbed I didn’t really care.   Early in the summer Mom informed me we would have a new woman who was coming to work for us and encouraged me to keep the stereo at a lower volume level on the lady’s first visit.   I was in a Diana Ross and the Supremes phase and preferred the speakers to vibrate as I sang along with Diana but I obligingly lowered the level for our new help.

    I needn’t have bothered.   Willie Meta Flora stepped into our house and lives and rocked all of us for more than forty-five years.   She became my mother’s truest friend and supported her through the deaths of her mother, brother and two husbands.   She nursed my grandmother and my dad and uncle during their respective battles with mental illness, colon cancer and cerebral palsy.   She watched over and protected and loved and cared for my family as she did her own.   In many ways, we became her second family and she chose to keep us.

    Willie and my mom shared a compulsion for honesty and directness that somehow worked to keep them close through the good times and the hard times in both of their lives.  They were stubborn strong women and butted heads occasionally, but most of all, they laughed together.   Willie’s sense of humor and quick wit kept Mom on her toes and at the top of her own game in their talks.   They also shared a deep love for the same man, my dad.   In her own way, Willie loved my dad as much as Mom did, and my father loved her and loved being with her right back.    His death broke both their hearts.

    Although Willie kept her own apartment, she and Mom basically lived together in the years following the death of Mom’s second husband.   Mom planned her days around the time near dusk when Willie would be there to spend the night with her.   Willie became her lifeline to maintaining her independence, and the two of them grew older and crankier as time passed.   Willie and I talked on the phone frequently and she began to tell me she was worried about Mom’s safety and getting lost when she drove around town.    I dismissed her fears and ignored the signs of dementia until Mom’s 80th birthday when it became apparent she had major problems in everyday living.

    Not long afterwards, I was forced to make a choice about my mother’s long term care needs and opted to move her to a Memory Care Unit in a facility in Houston which was a thousand miles from my home in South Carolina.   Why not move her closer to me?   A good question with a complicated answer that included my trying to keep her available to Willie and her family who could drive Willie to see Mom.    If my mother could choose between visiting with me or seeing Willie, there was no contest.   I would always come in second.

    Mom will be 85 next month and struggles with the ongoing physical and mental battles associated with Alzheimer’s in her ultimate race towards death.   This past fall I moved her again to a different residence that is still in Texas but much closer to my second home which is also now in Texas.   Alas, she’s two hours farther from Willie  and Willie has only been able to visit her once since her move.

    Willie will be 81 next month.   She and Mom have the same birthday month, and now they have the same disease.   We don’t talk on the phone any more because she can’t form words I can understand.   When I visited her yesterday, she didn’t recognize me and was uncomfortable with getting up out of her bed, just as Mom is sometimes when I go to see her.   Willie’s five daughters and three granddaughters are coping with the same problems I’ve faced with Mom – trying to keep her comfortable in a safe environment.   They have the additional complications of differences of opinion about Willie’s care and what the environment should be .   I decided being an only child has a few advantages.

    When I think of the strength of these two women and their determination to rise above their inauspicious beginnings in an era when women weren’t valued for their strong wills, I feel a sense of admiration and respect and gratitude for the examples they’ve been for me as they both loved me in different ways.   And I am struck by the similarity of their conditions in their last days.   Leora, one of Willie’s daughters, told me she thought Mom and Willie just might end their race toward death in a tie.   I’m thinking it will be a photo finish.

     

    P.S. Willie Meta Flora died April 14, 2012 and Selma Louise Meadows died April 25, 2012.

     

     

  • Humpty Dumpty


    Hello to those who read my essays and thank you for stopping by to take a look!   This piece is one I’ve written in the last few days, and I hope to post more this month than last, which turned out to be one.  Uno.  I can’t get The Red Man to shut up, but my own work is more difficult.   Go figure.

    HUMPTY DUMPTY

     

    Humpty Dumpty sat on a wall.

    Humpty Dumpty had a great fall,

    And all the King’s horses and all the King’s men

    Couldn’t put Humpty together again.

    —— Old English Nursery Rhyme

     

                I noticed the red dried blood and purple bruising on the top of her left hand as she sat with both hands folded in the large brown leather recliner that was her assigned seat in the den and wondered what in the world had happened.   This semi-conscious frail woman with wispy uncombed snow white hair slouched down in a chair that swallowed her…with her feet up in their usual elevated position.  Her green sweat suit pants and bright flowered cotton blouse she wore today didn’t belong to her, but they were clean and looked comfortable enough.  She sat on a white pad to prevent accidents to the leather chair.  She was dozing when I came through the door and didn’t stir when I bent to kiss her unwrinkled forehead.   She looked up at me and smiled and then closed her eyes again.   My mother wasn’t interested in talking today.

                Her caregiver Kathy sat across from me on the well-worn sofa and noticed my glance at Mom’s hands.   Kathy was a tall woman and big-boned as we used to say when describing a woman her size.  She had just stepped out of the shower when I arrived for my visit and her hair was wet and pulled back from her not unattractive face.   She had a great smile and genuineness I liked.  

                “Has your mother always been a scratcher or is this something new?” she asked.   “Most of the time when we struggle to get her to take a shower she scratches Norma or me.   I’ve got a new one right here.”   She pointed to a fresh scratch on her hand.   “Yesterday Selma thought she was scratching me but instead she scratched herself so hard on her own hand she made it bleed and then pulled off the band aid I put on it.  It looks worse than it is, though.”

                The idea of my mother being a “scratcher” was like a foreign movie without subtitles.  Difficult to comprehend, yet I knew it was true.  I’d heard a nurse say the same thing in her hospital room a few weeks ago to the young aide who was to give Mom a bath in her bed.  “Be careful, she’s a scratcher,” the nurse said.   I had almost fainted.  My mother, the prim and proper little woman who taught second grade in a public school for twenty-five years and played the piano in Southern Baptist churches for more than fifty years, was a scratcher.   It’s a world gone mad.

                “No, it’s not new,” I said.   “I’m not sure how long she’s been doing it, but I know it happened at least once during her hospital stay several weeks ago.  I’m so sorry she does it to you, but I can tell you it’s completely out of character for her.”

                “Oh, no, don’t worry.  I totally understand.  We’ve seen most everything with our Alzheimer folks,” Kathy said.

                I had entrusted the care of my mother six weeks ago to the two sisters, Kathy and Norma, who lived in the country twenty-two miles from my home in Montgomery, Texas.   Their brick house was an unassuming ranch style with a beautiful swimming pool screened and covered like the ones I had seen in Florida.  This made sense when I found they grew up in the Melbourne area.  The sisters came highly recommended to me by a friend whose father lived with them for seven years before he died last year.   My friend said her family had chosen them from several options and never regretted the choice.

                Mom lived in a Memory Care Unit for the past four years in a large assisted-living residential community in southwest Houston.   The setting was relatively plush and her unit housed twenty patients.   The cost rose every year she was there and was now almost $6,000 a month for her care for moderate to severe dementia and the related deterioration of her physical capacities.  Incontinence and lack of ability to walk without a walker were major changes in her condition in recent years.   Her world was sustained by her routine and the familiar surroundings of her private small apartment that defined it.   Locked entrances and exits set her boundaries and she adjusted to this world with an acceptance bordering on relief from the necessity of trying to preserve an identity she had long forgotten.   When I visited her in the Memory Care Unit, I typically found her in good spirits and checking her watch to see what she was supposed to do next.   Was it time for a meal?  Should she be in the dining room?   Did she need to go to the living room for a movie or exercise class or Wheel of Fortune or Bingo?   Were they going out for ice cream?   Someone had a plan, and my mother loved a plan.

                God bless long-term care insurance and the benefits it provided that covered the last four years of my mother’s stay in Houston.   Unfortunately, her benefit period ended this fall and economic realities made change unavoidable.   Her move to the house in the country was an answer for one problem but generated a host of others.   On the day I drove her to her new home, the conversation was dramatic foreshadowing of the days to come.

                “Mom, don’t you think it’s beautiful to be in the country like this?” I asked her as we rode along in my pickup truck.

                “Yes, it’s beautiful all right, but I wouldn’t want to live out here,” she replied.

                Indeed, she did not go gently into that good night, as the poet Dylan Thomas described.   When we arrived at her new home, she had forgotten the hamburger and fries I’d bribed her with at lunch to improve her mood.   She reluctantly sat down in the den with her two new compatriots, Anne and Virginia.   Anne had mild to moderate dementia and was in her early eighties, I would learn later.   She was an attractive frail woman with pulmonary issues and needed frequent breathing treatments.   Virginia was eighty-nine and proud of it and was in a better mental and physical state than either Mom or Anne.   She forgot words but generally followed conversation threads and understood contexts.  She was the only one of the three women who didn’t need a walker.    I liked the two women immediately and hoped Mom would, too.

                “I don’t understand why I have to be here, and I don’t think it’s right for you to bring me  without telling me we were coming to stay,” Mom said to me when we sat down on the sofa in the den.   Anne and Virginia each sat in large recliners facing the sofa and listened to our conversation.    Lack of privacy was a new challenge in the intimate den, I thought.

                “Well, they did the same thing to me,” Anne said to Mom.   “My daughter Beverly and her husband just brought me in here one day and left.”

                “Me, too,” Virginia chimed in.   “But I like it now and I’m glad you’re moving in.   You can have the other big chair.   I hope we don’t get anybody else because we only have three big chairs.”

                And so began the next chapter in my mother’s battle with the devils of her own mind and body.   Within ten days, as we began the process of changing to local doctors and pharmacies for her medications, she developed a severe urinary tract infection, which is not uncommon for women of her age and physical state.   But she required treatment in the community hospital for a week and after I brought her home from that stay, she hasn’t been the same.   She says little and doesn’t eat solid food.   The sisters feed her a liquid diet through a contraption that looks like an oversized eye dropper to me.   She’s had company in the hospital and in her new home – visits from nephews, cousins, other family members and even a visit from her former pastor.   She greets everyone with a smile and says a practiced thank you for coming.  The level of recognition appears to be distant with no connection to the present. 

                Her main question for me in the hospital as she lay attached to tubes of all sorts day after day was, “How long are you going to be in the hospital?  I didn’t know you were sick.”   I told her I didn’t know how long but I was glad she was there with me.    

                Did she have the uti before she moved?   Probably.   Would she have been so sick if she hadn’t moved?  Maybe not.  The mind and body work strangely in tandem, I’ve observed, and my mother is seemingly lost without her old planned life in the Memory Care Unit.   Hopefully, time will allow her to find a new routine that will offer her the comfort of consistency.   Her world is like the world of Humpty Dumpty, however.   All the King’s horses and all the King’s men won’t be able to put Humpty together again as he once was.  The fall has been too great.